One in forty??! So many of us… what a hard thing to digest!
My own ovarian cancer was diagnosed almost by mistake. I was referred for a transvaginal ultrasound because of symptoms that turned out to be totally unrelated to the cancer. The radiologist immediately recommended an MRI, which revealed the presence of masses on my ovaries and several other pelvic organs. I was referred to the BC Cancer Agency for an appointment with an oncologist, and was informed that I would undergo surgery in a few weeks. A date was later set.
It all happened really quickly. There was a cancellation, and my surgery was rescheduled. I had no time to mentally prepare for it, which was probably a good thing. My stress level would have been much higher if I had had to wait. The surgeon who called me to discuss what had transpired during surgery mentioned that it was probable that I carried the BRCA1 or BRCA2 mutation, as the type of ovarian cancer that was present in my body was commonly associated with the gene mutation. She expressed surprise at the fact that I knew so much about the BRCA mutations. In fact, I was woefully ignorant. I knew about the risk of breast cancer, and a few women I knew who carried the gene had elected to have prophylactic surgery. I knew nothing about the link to ovarian cancer; in fact, I knew nothing at all about ovarian cancer. I later learned that for carriers of the BRCA mutation, there was an additional risk of pancreatic cancer. I also learned about the link to prostate cancer and breast cancer in men. The learning curve was steep.
Surgery included the removal of some of my pelvic organs. The surgeon also scraped cancer cells from organs which had not been removed. I understood that tests were performed while I was under anaesthetic. The results of these tests determined the course of the surgery and led to the subsequent diagnosis of ovarian cancer. I would have chemotherapy as soon as the incision healed.
A month later, the oncologist who had been assigned to me led me into the lab at BC Cancer Agency, where I would have immediate screening for the BRCA1 and 2 gene mutations. He told me that it would be to my benefit if I was found to be positive, as a trial drug may be available to me after chemotherapy if I carried the gene mutation. The results were made available after 8 weeks, when I was called for an appointment with the BC Cancer Agency’s Hereditary Cancer Program. During the counselling session I was told that I was positive for the BRCA2 gene mutation. I had prepared data regarding deceased family members that I had knowledge of but, like many Jews of European descent, my siblings and I knew very little about family who had perished in the pogroms and the Holocaust. There were no known cases of cancer in my immediate and extended family, other than my brother who had been diagnosed with prostate cancer a few years earlier. I was advised to let all family members know the results of the test. My brother was subsequently tested and found to be BRCA2 positive, and has regular screenings now for breast cancer. Another family member, a second cousin who was tested after I shared my results, was also found to be BRCA positive. During a breast exam that she requested, a small cancer that is difficult to detect was found. It was safely removed.
After 18 weeks of weekly chemotherapy, I made the decision. I would take advantage of the availability of the trial drug, a PARP 3 inhibitor. I started taking it a month after my last treatment. Although there was a possibility that I was to receive a placebo, my blood tests were so obviously affected that I was sure that I had received the trial drug. It took a month for the correct dosage to be determined and I was relieved that I was able to tolerate it. An added benefit was additional screening: frequent blood tests, scans, and doctor’s appointments would be part of my routine. A month later I was informed that the study was “closed,’’ new patients would not be admitted. The drug would be available to patients (who were already in the study) for 3 years. The hope is that the benefits of the drug will be long term.
For me, knowledge is everything. Throughout the process, I found that the more I discovered about the gene and about my condition, the less anxious I became. I was able to trust the medical experts to make the decisions about protocol, to calibrate the exact dosage of chemo that my body could tolerate while destroying the cancer, while I concentrated on getting through the next week, before my next chemotherapy appointment. I was fortunate to have a brilliant and dedicated oncologist, and my care during those months was excellent.
Knowledge about your BRCA status makes it possible to make choices. A young woman who carries this gene may request clinical breast examinations beginning in her twenties. Some experts recommend regular mammograms for young women carrying the BRCA mutation. I know now that ovarian cancer is impossible to detect in the early stages. In my case, I had no symptoms and no reason to suspect that I had the condition. I honestly don’t know if it would have made a difference if I had known I carried the gene. I’m pleased that a family member did benefit from the knowledge of my BRCA status. And I think, that is the point. Individuals may not directly benefit from this knowledge. Family members may, and lives may be saved. This is what makes screening worthwhile. And knowing that one in forty carry this gene will surely be the most powerful motivator for Jewish people of Ashkenazi background to discover their own BRCA status and seek information.
-Anonymous ovarian cancer survivor, Vancouver, BC